Wednesday, January 16, 2008

I was thrilled to hear The Diving Bell and the Butterfly movie won two Golden Globe awards: Best Director and Best Foreign Film. I had just finished the book and was in awe of the author’s determination and style.

Jean-Dominique Bauby, Editor in Chief of French Elle magazine, had a massive stroke December 8, 1995. After three weeks in a coma and another month spent in a drug haze, he slowly began to realize he could not escape his hospital bed. He felt pain, but wasn’t sure whether it was “burning hot or ice cold.” To ward off the feeling he instinctively stretched, but his movement was less than an inch. Bauby was experiencing locked-in syndrome.

Bauby equated his post-stroke situation as being locked in a case, or as the title suggest, in a diving bell. He was breathing air and could move his neck a little, but the rest of his body was weighted down by the water.

The word butterfly in Bauby’s title is a symbol representing his imagination. He used his mind to escape the diving bell at every opportunity. “There is so much to do. You can wander off in space or in time, set out for Tierra del Fuego or for King Midas’s court. You can visit the woman you love, slide down beside her and stroke her still-sleeping face. You can build castles in Spain, steal the Golden Fleece, discover Atlantis, realize your childhood dreams and ambitions.”

Most victims of stroke are functional after months of rehabilitation; unfortunately, locked-in syndrome patients take years to learn the art of breathing over their vocal cords for speech. Bauby had the capability to grunt, but being a stylish well-educated man, he desired a form of communication more appropriate with his demeanor.

Easy enough, a blink pattern of once for yes and twice for no, was established during Bauby’s second month of recovery. His left eyelid, the only voluntary movement from his face, began to become the portal for all communication. Next, an alphabet system with the most common letters at the beginning was recited to Bauby, and he blinked at the correct letter.

Now, here is the most incredible part; Bauby wrote The Diving Bell and the Butterfly with his left eyelid! He would compose paragraphs during the morning, memorizing three or four, and then blink them back to his amanuensis. This memoir is a reminder; lives do change in a blink of an eye.